atti-TWO-de

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bday breakdown

Every night, either Mike or I go into the twins' room to cover them with their blankets. Mike's been traveling this week, so I slowly opened their creaky door (babe, you gotta fix that), tiptoed in, and - whiff, whiff - the dreaded smell of poop at 11pm. Damn it.

I leaned over Owen's crib (it's ALWAYS Owen), but no poop. I leaned over Eliot's crib, and found the culprit - my beautiful girl sitting in a pile of dirty diaper. I picked her up carefully, and half asleep, she snuggled her curly head of hair into the nape of my neck, and she hugged me. I lost it. I mean, I freaking lost it. There I was holding this stinky, sleepy kid, and tears just kept streaming down my face.

I honestly thought that after two years the trauma of the twins' birthday would subside. I thought that all of the wonderful memories our family has made in the past two years (and there have been SO many) would one day override all of the horrors. But it hasn't happened yet. I still remember. I am definitely not one to dwell on O & E's premature birth, but at this time of year - especially this day - it's too hard to hide from it. Their birthday was not a good day. It's like I remember it all in Hi-Def - the sounds, emotions, stress are still so vivid. But thankfully, I'm always welcomed "home" to the good old fashioned movie reels of a year full of crawling, walking, talking, EATING, and laughing. So much laughing. So much good. And with that, we keep moving forward . . .

Happy Birthday twinsies. I don't think you will ever realize how much I love my life and the fact that you are both in it. May all of the December 17th's in the future be more about the beautiful memories we make together, and less about my breakdowns. :)

bday party

In a few more days, we will have two turning two. Yesterday, we celebrated the twins' birthday with a small party at our house complete with cousins and grandparents. So. much. FUN!

For their present, Mike and I creatively played with our house floor plan, and renovated an 80-square foot storage closet under our staircase - turning it into a "play room." It turned out better than I could have imagined . . . what a fun space for the twins to sit, and play, and read, and grow. And the bonus? My family room no longer looks like a daycare.

This is how the room looked before the renovation.



The unveiling . . .

Welcome to the tree house!

We painted this wall a gajillion times with magnetic paint, but it works great!

Two large MDF square shapes painted with chalkboard paint.





A great Dr. Seuss quotation.

Owen playing with his cool, new car.

Eliot loved her "boons!"

Here come the candles!

Owie loved the chocolate icing . . .

El - not so much. ( I love her reaction. "What the crap is this?")

tubey button

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kissy kissy

A sign of what Owen will be like at the middle school dance . . . and, at the same time, a reason why Eliot will never be allowed to go to a school dance. Ever.

This film is rated P.G. - known in our house as Pre G-tube removal.

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buh-bye

Eliot had a G.I. appointment this morning, and after hearing about her progress with oral eating, the doctor decided it was time to remove her g-tube. (Thank god I packed my camera!)

A few tugs later, and our beautiful daughter was tube-free. Friends, Eliot is TUBE-FREE for the first time in almost two years.

After the appointment, we took her to eat at our favorite New York-style deli, and boy did we celebrate our matzo balls off!

El, we're going to take out your tube TODAY!

"Atti-tube!"

The removal was painful, and she was pretty unhappy . . .

But, she recovered quickly, and is doing great now.

the wonderful wizard of oz

The Lion

Dorothy

Uh oh, D. Do I hear a storm brewing?

Listening intently to directions to the Emerald City.

Who needs courage when you've got a smile like that!

The lion showing his true colors. (Chill Owie. There isn't really a tornado coming.)

Has anyone seen Toto?

There she is!

Do you remember Owen munching on the gourds last year? This Halloween it was Dorothy's basket.

pumpkin patch

Hay Ride!




This is the one!

application

When the time comes, I'm going to add this video to Owen's Stanford application. I really think it will help.

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vacation

The day after Eliot's feeding program ended, we left for a four-night stay in Hilton Head. It was our first family vacation, and it was AWESOME.

Let me warn you . . . there's a whole lotta Axt family in this video, but you can't blame me - it was the twins' first time on the beach, first time in the ocean, and the first time they got to show off their chic, new suits.

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PMO

The twins have recently started a new Parents' Morning Out program at a local church here in Decatur. Owen goes three days a week, and Elie goes twice. This gives Elie and me a chance to work in all of her different therapies on Friday without having to schlep her big brother around town, too.

Here are the twins this morning - complete with smiles and backpacks. I mean, seriously. If it gets cuter than this, I think my head might explode.

class of september 2009

"Sometimes our fate resembles a fruit tree in winter. Who would think that those branches would turn green again and blossom? But we hope it, we know it." ~ Johann Wolfgang von Goethe

I still cannot get over how much the Marcus feeding program helped Eliot. Our initial goal entering the program was to cut her g-tube feedings in half. After only four weeks, we were able to get her off of the g-tube completely, and on 100% oral feeds. She now eats four meals a day, without fuss or complaint. I think she actually enjoys food now. The stress surrounding mealtime has become a distant memory.

A lot of you are probably wondering about Eliot's g-tube ("Hey! If she's eating, does she still need to have an eight-inch tube hanging from her gut?"). The answer for now is "yes." We will see how her G.I. doctor feels about the tube at her appointment this November. We're in no rush, quite honestly. At least she always has something to play with in the bath tub.

For now, it's time to celebrate Eliot's last day at the Marcus Center's Pediatric Feeding Disorders Program. It's time to celebrate going from a D- during the first few weeks, to graduating with an A+. It's time for Eliot to enjoy fall's fresh asparagus, and hot chicken nuggets from Chick-fil-A.

Eight long weeks; a great eight weeks; a successful eight weeks. Go now into the future, sweet Eliot, and ask your daddy to make you some mac and cheese. Congratulations, my smart baby girl, on your first graduation. You are a class act, through and through.

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baby, you can drive my car

these boots were made for walkin'

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the beginning

I feel like everything is just beginning for Eliot. I mean, I know we've had the twins for almost twenty months now, but those twenty months have been so . . . what's the word?? . . . unusual?

Unusual with Elie anyway. Our daily routine was literally dictated by her severe reflux. Now, trust me. I know it's just throw up, and in the scheme of 27-week twins, we have it unbelievably good, but you cannot imagine how overwhelming it is to take care of a child who pukes constantly. And by "constantly," I mean upwards of twenty times a day. Imagine the laundry. Imagine the frustration.

Taking Elie anywhere the first year was a nightmare, because, for a period of time, she threw up every time we put her in the car seat. And, of course, we were always running late, and then Eliot was covered in puke, and then I was crying, and then she was crying, and then Owen was screaming, and it was all just one big fat nightmare. So, why go anywhere?

I'll never forget taking her into the grocery store when she was nine months old, and the woman behind the counter said, "What's that tube for?" (She still had the very visible n/g tube that went down her nose.)
"She doesn't eat."
"What do you mean she doesn't eat?"
"I mean, she doesn't eat."
"She doesn't eat anything?"
"Nope. Nothing."

And then Eliot proceeded to throw up everywhere, and even though I secretly wished she had thrown up all over the checkout woman with the ridiculous questions, it ended up hitting me, dripping down my leg, and pooling into my shoe.

I remember when she went through the dreaded separation anxiety phase. A baby who doesn't eat, who is used to throwing up all of the time, usually has an overactive gag reflex. But, I was determined to stick to our nightly routine, and I would bathe, read a book, and kiss my little O & E good night. I would shut their bedroom door, sit on the top step of our stairwell, and cry and cry - knowing that in a few minutes I would have to go back into their room, put Eliot back into the bath tub, change her crib sheet, and put her back into another pair of pajamas. This happened every night for over four months.

I will also never forget the countless times I got down on my hands and knees to wash the floor, the couch, the walls, the highchair, the cabinets, the kitchen barstools, the molding - talking myself down from the ledge by saying, "It's just puke. It's just puke . . ." Sometimes the days seemed nearly impossible to get through.

And then there was her eating, or lack thereof. You would not believe the looks you get when you have a kid who doesn't eat, and has a tube in her stomach. Plus, the advice . . . Oh. my. god.
"Just give her ice cream. She'll definitely like ice cream."
"You should try to feed her slower. You're going too fast."
"Have you tried chocolate? All kids eat chocolate."

Everyone wanted to help, but no one could. Everyone thought they had the answer, but no one did.

With Eliot's recent success in the Marcus Feeding Disorders program, I am starting to see things change positively for Axt Baby B. Monday was a big day. El is currently taking pureed foods and drinking whole milk from a cup. The process to move her to "toddler" food involves the following steps:

1.) puree (what she is eating now)
2.) wet ground (stage 2 baby foods)
3.) ground (stage 3 baby foods)
4.) chopped (chopped food with a knife)
5.) table texture (what most toddlers eat)

On Monday, the psychologist said, "Let's try to make the jump from purees to table textures, and see what happens. We are expecting her to spit the food out and gag a lot, but maybe she'll surprise us."

And surprise she did.

As of yesterday, Eliot is now eating - chewing and swallowing - table textured foods. This is REGULAR food, just cut up, and served on a spoon. Scrambled eggs, cottage cheese, chicken nuggets, asparagus, spinach, peaches, strawberries . . . !! We have four weeks left at Marcus. If she continues to progress, she will come home eating the kinds of foods that Owen is eating right now. How surreal . . .

That's why it makes me feel like life is just starting for her. All day at Marcus people talk to her and hug her, and she loves the attention and interaction. It's so amazing to see the kind of kid she was meant to be, the kind of kid she would have been if she had been given a fair start to life - a kid who is active, social, and alert; a kid who now seems to enjoys her days, and doesn't constantly feel sick. This big, new, delicious world full of yummy mandarin oranges and chocolate milk is opening up for her, and she is walking into it full force!

elie update

Week four started yesterday, and El's progress has been nothing short of amazing. At the beginning of last week, she was taking 30 - 40 grams per feeding session, approximately 3 ounces of food (which I thought was fantastic!). I was pulled into the "classroom" and trained to feed her, and last weekend I fed her at home and at Grandma and Grandpa's, and she ate perfectly.

Yesterday, her feeding therapist moved her from a level spoonful to a rounded. This was a huge step, as the amount of food increased dramatically. Eliot ate 142 grams at one session. I thought we were going to have to roll her out of the room.

With this recent progress, the nutritionist at Marcus has recommended that we CUT three out of her five daily tube feeds. (Go ahead and read that sentence again.) Over half of her daily calories are now finding their way into her stomach via her mouth. HER MOUTH!!!! This is unbelievable, right?

Here is a short video clip of Eliot eating last weekend. I forgot to put on her doo-rag before she started eating, so you're not going to get the full effect. But trust me when I say . . . this gangsta girl can eat!

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goin' gangsta

We had a meeting with Eliot's doctor at the Institute late last week where he discussed her eating progress thus far and future potential in the program. He started with this:

"What is so neat about Eliot is that she has a lot of techniques that get her out of the act of eating. She is very creative in all of her approaches, and she has a unique ability to adapt to our structure and find something that enables her to escape."

You should have seen my face.

"So . . . just to keep it real," I replied. "What you're saying is that Elie is really good at being bad?"

He smiled.

Yep. That's exactly what he was saying. Eliot has a lot of tricks.

Over the last three weeks at Marcus, she has hit the spoon, hit the therapist, and pursed her lips so tightly that she can't stop grinding her teeth at night. She has whipped her head back and forth, thrown her toys across the room, and mastered the art of playing possum. (You can't feed a baby that's asleep, right?!) Her newest "technique" is to pull her hair out in handfuls.

Grrreeeeat.

Apparently, it's good for her to try everything now so the protocol can show her that none of her tricks will work anymore. But hair pulling has been tough. The therapists can hold her hands down, but she then ends up crying, pulling away, and refusing to eat.

Mike came up with the brilliant plan of putting a hat on her head - not just a hat that could easily be pulled off, but a hat that would stay in place despite numerous attempts from little hands looking for a few strands of hair to pull. And it worked. Her hair pulling attempts went from 84 in the first session, down to 2 in the next.

So, here it is . . . my sweet little girl going gangsta. Please be discreet with comments about her new doo-rag. I would hate for Eliot to get mad, and decide to bust a cap in your ass.

week 2

Eliot gets fed four times a day at the Marcus Institute - three meals and one snack. The breakfast, lunch and dinner sessions last 45 minutes each, and her snack is only 30 minutes. I stay with her all day, and when she is in a feeding session, I watch her from behind one-way glass . . . think Jack Bauer in his many interrogation room scenes.

A therapist puts El in a highchair, and gives her a spoon of pureed food. If she takes the bite, then the therapist praises her; if she doesn't take the bite, then a behavioral data analyst, who is sitting with me on the "other" side, knocks on the window every twenty seconds to alert the therapist to say, "Eliot, you need to take a bite." Every. twenty. seconds. until she eats.

So . . .

This morning, El took five bites in 45 minutes. Yawwwwwnnnnn. I'll be honest, I dozed off a few times. I need some action at 8:30 in the morning. At her mid-morning snack she took an equally boring four bites. At lunch today, she took three bites, and then fell asleep with pureed chicken nuggets still in her mouth. She FELL ASLEEP in her highchair, and despite the therapist's attempt to wake her by putting cold compresses on her forehead, and standing her up to walk around the room, she could not get Eliot out of her slumber.

But, boy did that nap do wonders for the next session.

At her final session today, Eliot took twenty bites in 45 minutes. Now, that's not just twenty bites. That is TWENTY bites, and TWENTY swallows. Baby girl is SWALLOWING! She is clearly not enjoying herself quite yet, but wow, there was some definite progress today.

project eliot eats!

Last week was one of the best we have had with Eliot in 18 months. Her reflux stopped - literally stopped - last Sunday, and she has been symptom-free for the past seven days. (Cross your fingers that this continues . . . )

I always minimized acid reflux, but oh my god . . . it has run her life since she was born.

In the last few days, Eliot has not only started taking steps independently, she has also started eating. Wait. Whhhaaaaattt!!! She has started EATING???!

Yep, and it is perfect timing! Her first day at the Marcus Center's Intensive Feeding Disorders Clinic was today, and she was awesome. She is starting her 8-week program with an interest in food - a wonderful place to start! She ate five carrot chunks, three green beans, and twenty-two veggie sticks. Who is this child, and where is my Elie? I about fell out of my chair when she swallowed.

Here she is on her first day . . . Project Eliot Eats is underway!

She looks . . .


She opens . . .


She eats . . .

beanie giggles

Owen's "Fat Albert" laugh may put me into hysterics, but El's soft, little giggle just warms my heart.

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